Category Archives: migraine

My Migraine Credo

Here are thoughts about living with migraine.  It probably applies to other invisible, incurable conditions.

1.  My well-being depends on my getting more rest than the average person.  I will not feel guilty or let other people’s comments about my “laziness” deter me from doing what I need to do to protect myself from migraine episodes.

2.  I must try to live as normally as I can.  If I am going to feel miserable anyway, I might as well try to do something while I am miserable.  Lying around can bring me down emotionally.

3.  I accept that I cannot always do everything that I want to do.  I will express my disappointment and then try to move on and not pity myself.  If I can do nothing else but lie in bed, I will give myself leave to do so.

4.  It is all right to cancel plans at the last minute.  I will be honest with people about why I must do so and not feel guilty.  I am probably more disappointed than they are about missing something fun or meaningful.

5.  My doctor must earn my respect.  I will inform myself and will ask him good questions, and he had better be able to give me good answers, even if he has to look them up and get back with me.  He had better know more than I do about my condition or be willing to learn.  He needs to respect me as the one suffering and believe me when I describe my symptoms and my reactions to treatment.

6.  I am not entitled to take out my anger on other people.  Although my condition makes me irritable, I will do my best to speak calmly and politely to those around me.

7.  Although a positive attitude will not cure me, it beats the alternative.  I will recoil from despair.  I will laugh as much as I can–every day.

8.  I will talk myself down whenever it gets overwhelming and I think I cannot take it anymore.  I will remind myself that life will go on.

Advocate for Yourself

     I am part of an online support group for people who suffer from vertigo.  I am also part of a Facebook group for migraine sufferers.  (I suffer vertigo during migraine attacks.)  One thing that I have observed is how ignorant some people are of their condition and of treatment options.  I have also observed that some people almost seem content to suffer than to do the hard work of getting the help that they need.   I understand that attitude.  When you suffer from a chronic condition it is easy to succumb to despair and helplessness, but I don’t recommend doing so. 

Although doctors are around to help, it is ultimately the responsibility of the individual patient to take whatever steps are necessary to get relief.  We must be our own advocates.  General Practitioners may or may not be helpful at first with certain conditions.  We might need to urge them to refer us to a specialist.  We might need to humbly make suggestions or ask leading questions.  Maybe if we prompt our GP, he or she will do a little research or tell us where to find out more ourselves.

The first thing that we as patients need to do is be clear.  We should keep track of our symptoms and describe them fully and clearly to the doctor.  The doctor can help by asking the right questions, but we must not hold back or speak vaguely.  I think it is good to learn as much as you can about your condition or suspected condition.  Just be humble when you talk to the doctor.  He really does know more than you, so don’t try to teach him.  Just make suggestions or ask leading questions.  If it does turn out that you really do know more than him about your condition or suspected condition, then either he needs to do some research for you or he needs to send you to another doctor, perhaps a specialist.

The second thing that we need to do is be persistent.  If the doctor is being vague, insist politely that you want a firm diagnosis.  Ask if some test can confirm what the doctor is thinking.  Once you are on a treatment, if it is not working, you need to go back.  Doctors often try one thing while realizing that it might not be the best thing in your case.  They know that a dosage might have to be adjusted or a different drug might have to be tried.  Alert your doctor to intolerable side effects.  The doctor should be willing to keep working on your case until he finds a workable treatment plan or until he decides it is time to refer you to somebody else.  If the doctor seems fed up or vague or says that your problems are all in your head, choose to go to a different doctor.

The third thing that we need to do is stay informed.  We should learn what tests are available and ask our doctor about them.  We should be learning what new treatment plans are available and request them, if our current treatment has not been effective.  We should learn what non-medical things we can do to relieve our symptoms.  We should know about the drugs we are taking–their various names, their side effects, how they work, and interactions with other drugs or food.  (Pharmacists are usually glad to help with that information.)  I have heard people say that they switched from one drug to another and been amused, because they were taking the same drug with a different name.  I have heard them say they were going to try an OTC supplement with a certain brand name, and I have urged them to just get a generic version of that supplement.  You don’t need to pay five times as much for B2 just because it has a fancy name on the label.  And if you are already taking feverfew or some other herb, switching to a different brand will make no difference.

It can be hard work, but think of it as a quest.  You are on a quest to cure or treat your condition and to have a better life.  It is worth it.

My ‘Sweet’ Wife

     My wife was having a medical test run, and I was in the waiting room. There was a coffee dispenser, and it called to me.

     I hadn’t had any coffee for weeks.  I gave it up, because I concluded that coffee was triggering my migraine attacks.  I missed it very much.  It was my favorite thing to eat or drink.

     I decided to yield to the temptation.

     When my wife came back to the waiting room, she asked, “Should you be drinking that?”  She knows perfectly well that I shouldn’t.

     “It will be worth it,” I said.

     That night, after my wife had gone to sleep, I got very sick.  I was off balance, nauseated, and a headache was coming on.  I took my medicine and went to sleep.

     The next morning I reported to my wife what had happened, and she said, coldly, “Was it worth it?”

     I sure love that woman.

UPDATE:  For those who have to know, I did not think it was worth it, after all.

Vertigo and Migraine Terminology

     It is often difficult to find information on migraine-associated vertigo. Part of the difficulty lies in the different terminnology used, even by experts, and part of thedifficulty lies with people’s informal use of various terms, especially vertigo.

     I’ll start with vertigo.  To a doctor the word refers to a sensation that either oneself or one’s surroundings are moving, usually in a spinning or whirling motion.  However, many people use the word vertigo to refer to the uneasy feeling that a person with acrophobia gets when looking over a ledge.  That is not actual vertigo, medically speaking.  Some people also use ithe word to describe a confused state of mind or a sense of disorientation.  Again, that is not how the word is defined by healthcare professionals.

     By the way, vertigo is a symptom.  It is not the name of a disorder.  It can be caused by a number of disorders, including migraine, MS, labyrinthitis, Meniere’s disease, and several others.  The first time I suffered from a vertigo episode, the doctor diagnosed me as having “vertigo.”  I could have told him that.  He was a GP, and it was several years ago.  He just didn’t know any better, as most GP’s don’t.

     An even more confusing word than vertigo is dizzy.  Apparently doctors get a bit exasperated when patients say that they feel dizzy.  The reason is that the patient can either be talking about feeling light-headed–as though one is about to faint, or about having a spinning sensation or similar false sense of motion.  A doctor needs to know which one the patient has experienced.  I remember telling one of my doctors that I had felt dizzy and he asked, “Do you mean that you felt like you were spinning or you felt as though you would faint?”  So be specific with your doctor.

     All in all, it is much better to describe one’s exact experience to a doctor.  Instead of saying, “I felt dizzy” or even, “I experienced vertigo,”  it is better, for instance, to say, “I felt like I was spinning rapidly in a clockwise direction,” or “I had a hard time walking because I felt as though I was going to tip over.”

     On the other side of the fence from the patient’s use of terms is the problem of terms used by doctors.  People who suffer from vertigo related to migraine may find the doctor using any of these terms or perhaps another:

  • migraine-associated vertigo
  • migraine-related vestibulopathy
  • vestibular migraine
  • vertiginous migraine

It is important for somebody suffering from vertigo stemming from migraine disease to know that all of these terms refer to the same condtion rather than to different conditions. 

     Another bit of confusion arises when it comes to doctors who specialize in balance disorders.  Sometimes a general practioner can help, but an otolaryngologist (Ear-Nose-and-Throat doctor) has more training and is more experienced in these disorders than a GP.  However, an even more specialized doctor is called either a neuro-otologist or a neurotologist.

     I would like to end this post with a bit of advice.  If you have experienced vertigo, do not stick with any doctor who chalks it up to just stress or anxiety.  Do not stick with a doctor who gives a diagnosis of “vertigo,” since vertigo is a symptom rather than a disorder.  Do not stick with a doctor who just gives you anti-nausea pills or tranquilizers and tells you to take them for a few weeks and you’ll be fine.

     You must be persistent until you get a firm diagnosis and a treatment plan that brings you relief.  If necessary ask for a referral to a balance specialist (neurotologist) or change doctors until you see that you are getting a knowledgeable and helpful doctor who can really help you.

Migraine Falsehoods and Migraine Truths

     I wrote yesterday about a blog dedicated to disseminating truth and exposing falsehood when it comes to migraine disease. Today I want to list a few of the significant falsehoods that are circulating about migraine. After each one I will explain the truth.

     Falsehood #1   There is a cure for migraine.

     Many unscrupulous people claim that they have found the cure for migraine.  Do not beleive it, no matter how much you wish it were true.  Medical science is working on developing better and better treatments, but there is no cure.  Scientists do not even understand the mechanism of migraines completely.  It has something to do with the blood vessels in the head and with brain chemistry.

     People will try to sell you vitamin pills, herbs, or a book that outlines their treatment plan.  Some claim that they can cure you at their clinic.  These people cause harm, because they take your money and leave you no better off than you were before.

     It is true that some vitamins and some herbs are thought to be helpful, but you do not have to buy a certain brand from a certain company.  If you want to try one of those treatments, just buy them at a health food store, pharmacy, or even at a department store.  You’ll save money that way and you will not be supporting deceitful people. 

     And see a doctor.

     Falsehood #2    You just have to suffer through a migraine attack.

     I have run into people in cyberspace and in person who do not realize that there are treaments available for migraine.  Some have suffered for years, taking over-the-counter pain medicines that do not usually have much effect on migraine.

      There are drugs to prevent attacks that can be taken on a regular basis.  There are also drugs to abort an attack in progress.  If one drug doesn’t work, there are several others to try.  A person suffering from migraine should get medical help and should be persistent until a good treatment is found or until all possibilities have been exhausted.

     Some people never seem to get relief from migraine, but many people have found drugs that at least reduce the frequency and/or intensity of their attacks.  Many people have identified triggers that they can avoid, as well, thus reducing, or in some cases, eliminating migraine attacks.

     Falsehood #3     Migraine is just a bad headache.

     This falsehood is harmful for two reasons.  First, it is harmful because it can keep people from having justifiable sympathy for migraine sufferers.  Second, it is harmful because it can keep some migraine sufferers from realizing or believing that that is their problem.

     Migraine is more than a bad headache.  Those who have migraine headaches have compared them to knives being jabbed in their head or to having their head squeezed unmercifully in a vice.  In addition to the headache, many migraine suffererers are so sensitive to light and/or sound that they are nearly or completely unable to function.  Often they experience extreme nausea along with the pain.

     Some migraine sufferers get aura symptoms before the pain.  These include visual or auditory disturbances, tingling sensations, dizziness, and loss of vision or hearing.

     It’s not just a bad headache.  It’s a disease–a complicated and often debilitating disease.

     Sometimes people have aura symtpoms without experiencing the headache pain, or at least without experiencing the headache pain during every episode.  The latter description fits me.  Various names have been used for such migraine conditions, but they are definitely migraine.  I never realized that I had migraine disease, because I rarely had the headache.  I am glad that a doctor finally realized it.

     It is important to realize that you can have migraine disease without having headaches, because a person you know or you yourself could have migraine without even knowing it.  It could keep such a person from discussing his or her symptoms with a doctor.  If you have any migraine symptoms, it is important to tell your doctor about them–about all of them–so that you can be on the road to a diagnosis and then to treatment.

Learn More at Migraine Cast

Crusader for Migraine Truth

     When it comes to migraine, you will find misinformation and misconceptions about it on the Internet.  You will also find outright deception from people trying to profit from other people’s suffering.

     Thank God for a blog called Migraine Truth, which seeks to analyze and catalog the various mistakes and lies about migraine that are circulating.  It is run by Arabella, a migraineur like me.  She started the blog because she got “tired of misconceptions, misunderstandings, and outright lies!”

     If you do not want to take the time to read her various informative posts, you will at least want to make use of her lists of trusted websites, websites not trusted, and disappointing websites.  The lists will point you to the best, most reputable sources of information about migraine available on the Internet.

 

Mixed Blessing

     Don’t you hate it when the side effects of a medicine mimic the symptoms of the condition that you are taking the medicine for in the first place?  If you had not had that experience, I am very happy for you.

     I started taking a particular drug four days ago to prevent my migraine attacks, which were coming at least once a week.  The medicine seems to be working, but it has some unpleasant side effects that are similar but less debilitating than the migraines.

     I feel fatigued and slightly nauseated and a bit light-headed.  It’s actually hard to tell if I am being affected by the new drug or if I am having mild migraine symptoms. 

     If these symptoms do not subside in a few days, I will go off the drug and try something else.  Because of the frequency and severity of my migraines, I hope that I can take something to prevent them.

     If I do adjust to the medcine in the next few days, then I will stay on it for two months to see if I have any migraine attacks while on it.  A reduction of at least 50% in frequency or severity is what we are aiming for.  If that doesn’t happen, then the doctor will increase the dosage or have me try another drug.

     In the meantime, keep me in your thoughts or prayers or both.  I am able to function better than I can with the migraines, but I do not feel very well for the time being.